Ocular melanoma: Woman battles silent disease'

Digital First Media
Lauran Sperber with her husband Scott. Lauren is fighting ocular melanoma which has spread to her liver and brain. She wants to raise awareness about ocular melanoma (cancer of the eye.)

Scott Sperber can’t take his eyes off his wife. Inside their Los Angeles home, the couple sit across from each other at the dining room table and he can find nothing but superlatives as he describes his wife of 10 years.

Funny, giving, fearless - yes, she’s those.

But most of all, he says, she’s a fighter.

At 53, Lauran Sperber has endured more than most her age, beginning in August 2008, when she was diagnosed with ocular melanoma.

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“I was driving and I noticed that the vision in my left eye was different than it had been, it was blurry,” Sperber says.

“The doctor said, `You have a growth.’ And I said, `A growth?’ And he said, `Yeah.’ I said, `You mean a tumor?’ And he said, `Yeah.’ I said, `You mean cancer? Who has eye cancer?’ And he said `Yeah, you have eye cancer.”’

Her disease, also called melanoma of the eye, can affect various parts of the eye including the iris; eyelid; conjunctiva, which is a thin membrane that lines the eyelids and the white part of the eye; the eye socket; and the ciliary body, which lies right behind the iris.

But the most common location of ocular melanoma is the choroid, or the vascular layer of the eye between the sclera and retina, which is where Sperber’s cancer formed.

While ocular melanoma is considered the most common form of eye cancer, it is nonetheless rare - 2,000 to 2,500 adults are diagnosed with the disease each year, according to the Ocular Melanoma Foundation. As with skin melanoma, the risk factors for ocular melanoma include being fair skinned with blue eyes. It was also thought that sun exposure was a risk factor, but so far no study has confirmed that theory, according to the OMF.

Ultimately, very little is known about the disease, which is why Sperber wanted to tell her story.

“You never ever hear about ocular melanoma. It’s like the silent disease and I wanted people to know, the people that have it and the people that don’t, that yes, you can get eye cancer,” Sperber says.

“And you would think that eye cancer wouldn’t be that big of a deal - you could take the eye out and that’s the end of it. But even if I would have taken my eye out, it still would have been in my system, the gene. It still would have been in my blood. So I want to put a light on ocular melanoma, that’s very important to me.”

Symptoms of the disease include blurry vision, seeing flashing lights or shadows, and soreness in the eye, according to the OMF. But often there are no symptoms at all.

The survival rate of ocular melanoma is at least five years from the time of diagnosis, but only if the cancer does not metastasize.

For Sperber, she went into remission for three years after being treated with a radiation plaque, which is sewn into the back of the eye to feed in radiation.

But at one of her regular checkups, in August 2011, it was discovered the cancer had spread and she was diagnosed with Stage 4 ocular melanoma of the liver. After the discovery, her doctors told her she had six to nine months to live.

Sperber has undergone various types of chemotherapy, as well as ablation therapy, and she had part of her liver removed, as well as her gall bladder following negative effects of treatments.

Then earlier this year, June 24, she fell and was taken to the hospital for a CAT scan. That led to the discovery that the cancer had yet again spread, and she was diagnosed with ocular melanoma of the brain.

After a craniotomy and gamma knife surgery - high-intensity, targeted radiation used to treat brain tumors - she was deemed clean of brain cancer, though she is continuing to get checked regularly.

But her liver cancer remains.

Sperber’s response to the cancer - and to her doctors - has been to treat it as aggressively as they can, to the point where chemotherapy and other treatments are taking a toll on her body.

“As long as the body can tolerate it and the spirit can get through it, why not do it? I don’t get that. I mean, for me, I want to be here. I have things to do. I have a husband to be with, a mother to care for, friends that I love. I have a home. I have animals,” Sperber says.

“But aside from all of that, I want to be here. I’m afraid what it’s like to be dead and I don’t know what that will be like. And I don’t know how (my husband) will manage because we’re very connected and I don’t know how my mother will manage, so I feel very responsible for both of them and therefore I’ll do anything. I mean, I’ll do absolutely anything.”

But the cost to fight her cancer has been crippling. The Sperbers estimate they owe at least $300,000 in medical bills.

Back during her three-year remission after the initial ocular melanoma diagnosis, Sperber underwent gastric bypass surgery. Two days later, she suffered a major heart attack that required open-heart surgery.

Complications from the surgery had the Sperbers questioning the hospital’s billing, which led to a lawsuit against them. They lost and now have a lien on their house, adding to their financial stress.

“Cancer is very expensive to fight and we’re not wealthy,” Scott Sperber says. “I’m in a situation where I don’t have any income coming in. I’m in the middle of something to change that - it’s not changed yet.”

His job is being a caretaker for his wife all day, every day.

To ensure he can continue to help her fight her battles, he’s created a fund for his wife at www.giveforward.com, so people can donate money to help pay for her medical expenses. His goal was to raise $100,000, but over the last couple of months they have raised just $3,434.

The title of the fund is “Please Help Me Save My Wife.”

“She listens better than anybody I’ve ever known. And she saved my life because at 50 I was kind of a mess and as we went on with our marriage she brought out how much of a mess I was. But who the hell knew? People took care of me, I didn’t have to take care of anyone ever,” Scott Sperber says.

“It’s a humbling position to ask for help. We go to doctors sometimes three or four times a week and our insurance only pays 70 percent, which we’re thankful to God, but 30 percent of hundreds of thousands of dollars is more than we have.”

Despite everything the two have been through in their short marriage, they still describe it as a good union. The Sperbers try to keep things light. They have a sense of humor about the things they cannot change and though they don’t have children, they have “furry Sperbers” - a cat and a few dogs.

Lauran Sperber dreams of visiting a friend in Hawaii, spending time on the beach relaxing.

But for now, they live day to day.

Doctors say she could live five more months, or 24 months. Nobody can say for sure.

But she keeps fighting. And she keeps hoping: hoping that during whatever time she has, a cure will be found. Hoping her story will inspire others and raise awareness of ocular melanoma. Hoping she can have some quality time with her husband.

“We’re blessed. It could have been so much worse and I could be dead by now, which is just unbelievable to me,” Sperber says. “It’s hard to believe that you’re on borrowed time, you know? It’s a weird feeling when they say you should have been dead five months ago.

“I asked my husband last night, `What’s it going to be like to die?’ And he doesn’t know. So, it’s scary. And like I said, I’m 53. That’s young. To me, that’s very young. I’m not ready to go. I still have dances to dance and books to read and jokes to make.”

To learn more about ocular melanoma, go to the Ocular Melanoma Foundation website at www.ocularmelanoma.org.